Candidates dizzy? So are some voters

 

The medical folks say that my rare disease has no cure, and the most promising candidate for president has not yet promised to cure it. The experts say there may be no more than 25,000 of us in the United States. We may not be numerous, but we are dizzy enough to make a valuable voting bloc.

Multiple System Atrophy (MSA) is a homeless ailment that settles itself in the brain like a TV cable company, deciding what its host will see and not see. It gives its victim the diminished animation known as a poker face, but adds a clumsiness that betrays a poker hand. It often wipes out sweating, like an underarm spray that just kept going.

MSA usually appears when a person is in the 50’s. It takes time to diagnose, so there may be some confusion about the precise starting time. One study says that the median survival time after diagnosis is nine years, but another records more than 20 years. If I had my way, both party platforms would call for a higher minimum age.

MSA apparently strikes at random, like the referee at a political debate. It is not contagious and it is not inherited from parents, no matter how goofy they may seem. The doctors say it is progressive. It advances fast in some cases, slowly in others. I am one of the lucky ones, having been labeled slow poke by my mom. Since my diagnosis 14 years ago I’ve become a rollator navigator, learned how to unchoke, how to tumble, how to use the TV captions on all of the shows because all of the performers have started to mumble.

The days slow down, and I enjoy them. The new math is hard to figure, but 24 hours feels like 48, while I spend 24 hours doing what I used to do in 12. I have less time for Facebook and making cards. I’m still here, still in love with family and friends and the Eternal. No big deal. No sweat!

It was a dandy headline, but then I forgot it

Grandpa William Olmstead reading his newspaper.

I didn’t understand oldness when I was a kid. Nobody around me acted old. My grandpa was up at 3 o’clock every morning to get the first streetcar of the day on the tracks. He was in his youthful 70's and so was my grandma, the one who got up before dawn one Christmas morning so she could do the laundry, hang it up to dry, iron it and put it away. Christmas that year fell on a Monday. Monday was Wash Day and in 1933 Monday was Christmas, both sacred in ways known to my grandma and her neighbors.

It was the Great Depression that had me living with my grandparents in Celoron, N.Y., in 1933, but mental depression may have been a threat to those septuagenarians, all of a sudden having to get an eight-year-old kid off to school every day.

Social Security was still a dream in the mind of an Episcopalian layman, one of 11 who served as president of the United States, and the years of the Great Depression were not notable for pensions generally. Life expectancy for Americans in 1933 was 63.3 years. There weren’t so many elderly, and they were largely invisible. There weren’t many ramps and power wheelchairs to get the disabled out of the house, no wide aisles for shopping or public rest rooms for people with special needs. By 2014 life expectancy had climbed to 78.94, and ways to keep smiling despite disease and disability had climbed with it.

Family and friends, and some strangers, too, have shown me how to enjoy the aging process in ways I could not have imagined. I didn’t try very hard to imagine it when I was young. I was astonished, several decades ago, to be named to the White House Conference on Aging. I didn’t know anything about aging, and I wasn’t ready to learn. If I had looked over my shoulder I would have seen the caisson loaded with dizzy brain cells and wrinkling surfaces . It was getting closer.

Once a journalist, always a journalist, is one of my earliest professional superstitions. It was already taking form in that Celoron house in 1933 when my pal Harold Lind and I produced a neighborhood newspaper, with circulation limited only by the amount of carbon paper at our disposal.  Harold, the smartest boy in school, was killed in the Battle of the Bulge in the war we thought would assure world tranquility.

Those journalism genes have kept my itchy typing fingers turning out occasional reports on the rare, incurable disease called Multiple System Atrophy, once known as Olivopontocerebellar Atrophy. I provide an insider’s view, having been diagnosed several years ago. It is a difficult disease to diagnose, and I probably had it for a while before it was named.  Well, some of my co-workers may have had a short name for it, but they usually were patiently confused.

There aren’t many new symptoms, but the old squishy-head symptoms are more aggressive. They add a feeling of adventure to rising out of a chair, or getting out of bed, or taking a shower. There’s a pill for gout, other pills for other things, the names of which I have forgotten because there is no pill for remembering them. The brakes are on, hidden in the throat, fingers, brain, feet. MSA folks tend to get slower. Now that I’m 91 years old I celebrate the happy fact that I’m slow to stop. It is a good omen, and I wish I could remember to buy a lottery ticket.

Thanks for reading this far. I still read a lot, enjoying the latest John Sandford novel, “Extreme Prey.” This gave me a momentary thought about writing a book to be called “Extreme Pray.” Maybe that notion came from some other current reading of Franciscan Father Richard Rohr and Jesuit Father Pierre Teilhard de Chardin during an intermission between mystery/adventure novels on my Kindle Fire. I continue to enjoy the poets, including the vast poetry of the Gospels. May the good news be with you.